Tag: amyotrophic lateral sclerosis

Bioethics News

Book Review: Cells Are The New Cure (BenBella Books, Inc., 2017). ISBN 9781944648800.

$26.95. Reviewed by Michael S. Dauber, MA

 

Cells Are The New Cure, written by Robin Smith, MD, and Max Gomez, PhD, is a book about the history of medical research on cells, both human and non-human, and recent developments in these techniques that have made cellular medicine one of the most promising fields for therapeutic exploration. While the book’s title suggests an exclusive focus on the healing aspects of genetic modification and human stem cell therapy, the text is much more than that: it is a roadmap for understanding the origins of such techniques, the current state of affairs in cellular and genetic therapies, the administrative landscape investigators must traverse in conducting research, and the areas in which we still need to make progress.

Smith and Gomez make an argument that is structurally simple yet gripping: they suggest that targeted therapies involving stem cells and genetic modifications are the future of medicine by pointing to the immense amount of studies in those fields that have yielded beneficial results. While many readers might acknowledge this fact even before reading the book, many may not be aware of the full extent of the knowledge we have gained from research on cells and genetics, or the myriad ways this knowledge has been applied. Of course, Smith and Gomez cover the big diseases that most people think of when imagining medical research: cancer, heart disease, neurodegenerative conditions, etc. However, the book also contains detailed information about how we age, what may cause certain allergies, how the body repairs itself, and the ways stem cell therapies, genetic editing techniques, and other complex medicines that build on these methods can be used to treat these conditions.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

20 Years of Death with Dignity in USA

The nation’s first “death with dignity” law turns 20 this year.  Since the six other states have affirmatively legalized medical aid in dying.


A new analysis published in JAMA Oncology is taking a look back at how the law has been utilized in Oregon since it went into effect in 1997. 

  • Total Usage – A total of 1545 prescriptions were written, and 991 patients died by using legally prescribed lethal medication. 
  • Age & Gender – Of the 991 patients, 509 (51.4%) were men and 482 (48.6%) were women. The median age was 71 years (range, 25-102 years). 
  • Increase – The number of prescriptions written increased annually (from 24 in 1998 to 218 in 2015), and the percentage of prescription recipients dying by this method per year averaged 64%. 
  • Diagnoses – Of the 991 patients using lethal self-medication, 762 (77%) recipients had cancer, 79 (8%) had amyotrophic lateral sclerosis, 44 (4.5%) had lung disease, 26 (2.6%) had heart disease, and 9 (0.9%) had HIV. 
  • Mental Health Screening – Of 991 patients, 52 (5.3%) were sent for psychiatric evaluation to assess competence. 
  • Race & Hospice – Most (953; 96.6%) patients were white and 92.2% were in hospice care. 
  • Insurance & Education – Most (118, 92.2%) patients had insurance and 92 (70.8%) had at least some college education. Most (94%) died at home. 
  • Duration – The estimated median time between medication intake and coma was 5 minutes (range, 1-38 minutes); to death it was 25 minutes (range, 1-6240 minutes). 
  • Complications – Thirty-three (3.3%) patients had known complications. 
  • Motivation – The most common reasons cited for desiring PAD were activities of daily living were not enjoyable (89.7%)

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

ORGAN DONATION AFTER MEDICAL AID IN DYING

Jennifer A. Chandler describes some of the ethical and legal challenges surrounding organ donation following medical assistance in dying.

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Today, it is medically possible to donate organs following death brought about by medical assistance in dying. This currently happens in countries like Belgium and the Netherlands. People with neurodegenerative conditions like amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, or multiple sclerosis (MS) are eligible to donate organs. Those with cancer, however, are not eligible because of risks to recipients.

In Canada, people with neurodegenerative conditions who satisfy the legal eligibility criteria for assisted dying may also meet the medical eligibility criteria for organ donation. However, this possibility raises novel ethical, legal, and policy issues that must be carefully considered. The following four hypothetical cases illustrate some of these issues.

CASE 1 – A patient seeks assisted dying and wants to donate to a family member.

Some provinces allow people to direct their organ donations to relatives after they die. Some patients who choose assisted dying may derive some comfort from being able to help a family member in this way. There is the risk, however, that patients may feel pressured to seek assisted dying, in part, to benefit a sick relative.

CASE 2 – A family member is asked to consent to cornea donation for a loved one who passed away through assisted dying. The patient was not asked about this before his death because he was not registered as an organ donor, and nobody wanted to burden him with the decision. 

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Cello – New Movie about Hastening Death in Face of ALS

Cello is a short film about one man’s battle with ALS, and the choices we all hope we never have to make.


Olivia knows there is something wrong with her grandpa.  He has been slowing down and unable to play his cello. In fact, master cellist, Ansel Evans, has been diagnosed with ALS (Amyotrophic Lateral Sclerosis). As his body shuts down, he makes the difficult decision to minimize the suffering for his closest loved ones by planning one last concert. But this decision won’t be an easy one to explain to Olivia.


The story is told from Olivia’s perspective, leading audiences to uncover their own wonder, joy and meaning of a difficult situation.  This story seeks to accurately dramatize the fear, sorrow and insecurity ALS patients experience day by day, due to losing control of their body. 


While, for many with ALS and other terminally ill patients, the largest fear becomes that of leaving loved ones to suffer as they do. This film introduces the idea that each individual who has a will and a right to determine how to say good bye to those they love most. It’s a personal choice.

CELLO Trailer from Hannoah Entertainment on Vimeo.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Brain-Computer Interface Allows Speediest Typing to Date

February 21, 2017

(Scientific American) – The promise of brain–computer interfaces (BCIs) for restoring function to people with disabilities has driven researchers for decades, yet few devices are ready for widespread practical use. Several obstacles exist, depending on the application. For typing, however, one important barrier has been reaching speeds sufficient to justify adopting the technology, which usually involves surgery. A study published Tuesday in eLifereports the results of a system that enabled three participants—Degray and two people with amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease, a neurodegenerative disease that causes progressive paralysis)—to type at the fastest speeds yet achieved using a BCIspeeds bring the technology within reach of being practically useful.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Brain-computer interface allows completely locked-in people to communicate

A female participant in the locked-in study     

A computer interface that can decipher the thoughts of people who are unable to communicate could revolutionize the lives of those living with completely locked-in syndrome, according to a paper published this week in PLOS Biology.

And contrary to expectations, the participants in the study reported being “happy,” despite their extreme condition. The research was conducted by a multinational team, led by Niels Birbaumer, at the Wyss Center for Bio and Neuroengineering in Geneva.

Patients suffering from complete paralysis, but with preserved awareness, cognition, and eye movements and blinking are classified as having locked-in syndrome. If eye movements are also lost, the condition is referred to as completely locked-in syndrome.

In the trial, patients with completely locked-in syndrome were able to respond “yes” or “no” to spoken questions, by thinking the answers. A non-invasive brain-computer interface detected their responses by measuring changes in blood oxygen levels in the brain.

The results overturn previous theories that postulate that people with completely locked-in syndrome lack the goal-directed thinking necessary to use a brain-computer interface and are, therefore, incapable of communication.

Extensive investigations were carried out in four patients with ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease) — a progressive motor neuron disease that leads to complete destruction of the part of the nervous system responsible for movement.

The researchers asked personal questions with known answers and open questions that needed “yes” or “no” answers including: “Your husband’s name is Joachim?” and “Are you happy?” They found the questions elicited correct responses in 70% of the time.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Reached Via a Mind-Reading Device, Deeply Paralyzed Patients Say They Want to Live

February 1, 2017

(MIT Technology Review) – Bauby suffered from “locked-in syndrome,” in which patients are completely paralyzed except for some eye movement. Some patients eventually lose even the ability to blink, cutting off all contact with the world and raising questions of whether they are still fully conscious and, if so, whether they still wish to live. Now researchers in Europe say they’ve found out the answer after using a brain-computer interface to communicate with four people completely locked in after losing all voluntary movement due to Lou Gehrig’s disease, or amyotrophic lateral sclerosis.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

‘Locked-In’ ALS Patient Communicates After Receiving Brain Implant

November 15, 2016

(UPI) – A high-tech implant has enabled a paralyzed woman with late-stage ALS (amyotrophic lateral sclerosis) to communicate through brain signaling, researchers say. The degenerative disease robbed Hanneke De Bruijne, 58, of all voluntary muscle control — including the ability to speak — while leaving her mind intact. But an experimental implant-software program allows the “locked-in” Dutch woman to type words without assistance.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Creative Minds: Can Diseased Cells Help to Make Their Own Drugs?

Matthew Disney

Matthew Disney grew up in a large family in Baltimore in the 1980s. While his mother worked nights, Disney and his younger brother often tagged along with their father in these pre-Internet days on calls to fix the microfilm machines used to view important records at hospitals, banks, and other places of business. Watching his father take apart the machines made Disney want to work with his hands one day. Seeing his father work tirelessly for the sake of his family also made him want to help others.

Disney found a profession that satisfied both requirements when he fell in love with chemistry as an undergraduate at the University of Maryland, College Park. Now a chemistry professor at The Scripps Research Institute, Jupiter, FL, Disney is applying his hands and brains to develop a treatment strategy that aims to control the progression of a long list of devastating disorders that includes Huntington’s disease, amyotrophic lateral sclerosis (ALS), and various forms of muscular dystrophy.

The 30 or so health conditions on Disney’s list have something in common. They are caused by genetic glitches in which repetitive DNA letters (CAGCAGCAG, for example) in transcribed regions of the genome cause some of the body’s cells and tissues to produce unwieldy messenger RNA molecules that interfere with normal cellular activities, either by binding other intracellular components or serving as templates for the production of toxic proteins.

The diseases on Disney’s list also have often been considered “undruggable,” in part because the compounds capable of disabling the lengthy, disease-causing RNA molecules are generally too large to cross cell membranes.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

What is the current clinical usefulness of stem cell treatments, embryonic and iPS cells?

Human adult stem cells (iPS) have been found to be most clinically useful human cells for therapeutic purposes

Pluripotent cells (PCs) are defined as those from which cells of different tissue types can be obtained. These can be obtained either from preimplantation human embryonic cells, in which case pluripotent embryonic stem cells are obtained, or from somatic (adult) cells that can be reprogrammed to a state of pluripotentiality, called induced pluripotent cells (iPS cells).

Ad present stem cell treatments with human adult stem cells have been found to be most clinically useful human cells for therapeutic purposes, especially cells from bone marrow, peripheral blood, umbilical cord blood or other tissues. Mesenchymal cells obtained from bone marrow, placenta and the umbilical cord are particularly useful. These cells have the advantage of having low immunogenicity and the disadvantage that after being transplanted, they persist for very little time in the recipient, which poses problems for maintaining their effect over time. These cells can be obtained from the patients themselves or from external donors, which gives rise to autologous therapy (which uses cells from the patient themselves) or allogenic therapy (which uses cells from individuals other than the patient). Their use has so far given good results as regards their safety, which has been evaluated in very diverse clinical trials. However, pluripotent cells, both embryonic and iPS cells, have limited clinical applications as they have been used in little more than ocular diseases. Therefore, it is of no interest to analyse this clinical usefulness at present, following a magnificent review recently published in Nature Reviews/Molecular Cell Biology (17; 194-200, 2016).

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.